I am mum to a son who currently needs a lot of support with many aspects of his day to day life including dressing, self-care and eating. As he gets older, the ways in which I help him may alter but there is little doubt that he will always need me in a way that his ‘typical’ twin brother wont. But does this make me a carer?
I was recently contacted by a local newspaper who told me that I had been nominated for an ‘Our Heroes’ award in the category of carer. Initially I was stunned and incredibly grateful that someone had taken the time to put me forward for this recognition. Then I got thinking about what it means to be a carer, whether I identified with that role and where my role of mother meets the role of carer if at all.
You see, when someone says ‘carer’ to me I immediately imagine someone looking after an elderly relative or a loved one with a physical disability that means they need to be on hand for the majority of the time. I think of someone who is unable to work because of their caring commitments and one who needs respite time to refuel themselves as they constantly put others first. I don’t necessarily consider my role, which may involve chastising my son as he laughs wildly in my face because he just posted his collection of clocks through his bedroom window, as being anywhere near the stress and pressure that others face.
And yet, there is a stress and pressure in caring for Harry that isn’t there with Oliver. For example, I have to be mindful of where I sit in relation to him at the dinner table so that I can help him eat, I have to talk to him from his right side as that is his only ear, I have to guide him to get dressed and undressed and prompt him to do even simple tasks like use the toilet. He can’t ever be allowed to pop out on his own like Oliver can as he is non-verbal with no sense of danger. I have to omit some trigger words from conversations and think very carefully if I am explaining anything to Harry who takes my word as gospel and can either become distressed or over stimulated respectively. I live in a state of constant high alert. Whereas his brother is fairly independent, Harry still needs me and until now I have only seen that as being part of my role as his Mother but the recent nomination really has got me thinking.
I have no problem with seeing Oliver as a young carer. Because of Harrys conditions, he doesn’t have the same bond with his brother that other siblings have and Oliver has far more responsibility and things to consider than his peers. I have written before about how he is the hero of our story as well as his battles with his anxiety and I have helped him to access activities and days out with the Young Carers association which supports some of the 700,000 young people caring for disabled or sick loved ones. I feel that it’s important that his teachers and friends recognise that he is an amazing young man with more on his plate than most (and I don’t mean pizza!) and yet I struggle to see myself as a carer. Why is that?
I am part of a fantastic group on Facebook with other parents who blog about their children with Special Educational Needs and Disabilities (SEND) and I asked where they see themselves when it comes to parent and carer to see if it would help me decide how I felt about the title.
Gemma ~ I have always just considered myself a mum but I guess we are carers because we go beyond the ‘normal’ duties of most parents
Cara ~ I’m a mum. I care for both my kids and when I need to say on a form that I’m a carer that’s what I say but for me that’s not who I am or what I think of myself as being every day, it’s just the role that I have to align myself with.
Hana ~ I’m Tilly’s Mum. Everything I do for her is because she is my child and I love her. I’m not her carer and never will be. Tilly has very high needs and I have a full time nanny whilst I’m at uni. But I’ll never be her carer
Laura ~ I find this a tricky one to answer just based on my own situation. I suppose I feel like a bit of a fraud with the carer title. My son needs more help in lots of ways than his three year old sister but we all do whatever it takes for our kids. I think I’ll feel more like the carer title fits as he becomes an adult and needs my care. Maybe. I don’t know. I’m his mum.
Sheri ~ I didn’t like admitting I was a carer as I thought I’m just doing what a mother would do…. But now I don’t think it is just purely that. Of course I do it because I am his mum, but the reason behind it that doesn’t mean I can’t count as a carer in the wider sense. That’s the label you are given for doing anything beyond the ‘average’ and not engaging in that can keep closed doors locked in terms of support BUT even saying all that the term still makes me shiver a little.
Malin ~ I feel like both mum and carer (and teacher, too!) Our son is 11 now, but he needs an adults care at all times to keep him safe, as well as to help and assist him with most aspects of everyday life. I don’t mind having more than one role/label. I can be mum AND carer AND teacher. But it’s taken a good few years for me to grow into this multi-facetted parenting role. If you had asked me a couple of years ago, I’d probably not been as comfortable with the ‘carer’ label.
Steph ~ I didn’t relate to the title carer at first either, but 8 years on from diagnosis I do now. I guess it’s the realisation that everything you are doing goes on; yes, we are their mum, but we are still doing more for them than mums of other children without additional needs. The more you allow your mind to start wandering about the future you realise that they will most likely always be with you, or if not with you then you will most likely always be very involved, unlike with other children… it is a full time, never ending caring role. I wouldn’t have it any other way though
Emma ~I definitely feel like a carer and I hate that. I want to be just ’mum’ in the same way I am to my other son. I guess it’s all the medical procedures that makes it feel like a caring role. Although of everything- the tube feeding, the resuscitation, the managing seizures and medications, the various machines and monitors he uses, it’s actually the hoisting that makes me feel like a carer the most. It feels so impersonal. Also, the fact that no one else (other than those who are paid to help) will be alone with my son definitely puts me in the carer rather than Mum category.
Miriam ~ I very much feel I am a full time carer. I think for me, having twins and seeing the difference between parenting one and caring for the other is stark. My son gets regular respite and his carers do what I do daily, it’s impossible for me to work due to the level of care he requires too and the fact he should be getting more independent yet medically and developmentally he is less independent than ever highlights the difference for me.
Marc ~ I guess I felt like a career once the kids reached ages where I was doing things for them that I wouldn’t do if they didn’t have disabilities. I’m their full time career, that’s kind of my job, well it’s the thing that stops me getting a ‘normal’ job. I have no issues with the term ‘carer’ except when it’s used negatively to describe a care professional. Sadly, we hear it mostly when they are in the news – carer steals from pensioner, carer abuses adult in their care etc. So yes I’m a carer, and proud to be. I’ll take the term and wear it like a badge of honour. I’m proud to be my children’s carer. Nobody else is.
Having read other peoples views and thought about it a little more I think that while I feel more like a mum than a carer I am actually both things. I care for my son in ways that someone unfamiliar with Harry wouldn’t be able to do and much more than I have to care for his twin brother. The fact that I do that through love and not obligation doesn’t negate the fact that it is in fact a caring role. In fact, the more I think about my earlier vague idea of what it means to be a carer, the more I do see the overlap; My ability to work full time is impaired for a variety of reasons and while I don’t receive respite care, the time I have when the boys are with their Dad is very important to my physical, emotional and mental health.
It’s clear that some people are happy to be called a carer and others might actually be offended by the label. I think that’s probably one of the reasons why there are thought to be so many more carers than are officially known. There are no clear definitions and even when there are, we are reluctant to admit that we are partaking in a role which suggests we don’t have a choice in the looking after the people we love when in fact it is often an honour (albeit it frustrating and challenging at times).
So yes, I am a mum and a carer. I don’t for a minute expect to win an award for what I do as I am sure there are many more deserving nominees but I am grateful to the person who saw in me what until now I didn’t even see myself. Whatever we call ourselves, whether it is our child’s voice, advocate, carer or kick ass warrior I think its true for us all that we need to step back at times and realise that being recognised for that should be something we are proud of and not embarrassed about.
If you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now!